DOI: 10.1177/21694826261491162 ISSN: 2169-4826

Comparing Pediatric Parenting Stress Between Parents of Youth With Differences of Sex Development and Parents of Youth With Other Chronic Medical Conditions

Jaclyn L. Papadakis, Alexa Weinberg, Emilie K. Johnson, Courtney Finlayson, Diane Chen
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Objective: Parents of youth with chronic medical conditions, including parents of youth with differences of sex development (DSD), face unique challenges and stressors. This brief report describes a study comparing pediatric parenting stress between parents of youth with DSD and other pediatric chronic medical conditions. Methods: Participants included 242 parents (144 mothers, 98 fathers) of 154 patients [ M age = 7.72 (6.75) years; most common diagnoses: 46, XY DSD of unknown etiology, Klinefelter syndrome, mixed gonadal dysgenesis, congenital adrenal hyperplasia] attending an interdisciplinary DSD clinic who completed the Pediatric Inventory for Parents (PIP; Streisand et al., 2001

). T -tests were conducted to compare means between the present sample and those reported in eight published studies on other pediatric chronic medical conditions. Results: Parents of youth with DSD reported lower pediatric parenting stress across all subscales compared to other chronic medical conditions, with medium to large effect sizes. Conclusions: Parents of youth with DSD report less pediatric parenting stress compared to parents of youth with other chronic health conditions, perhaps reflecting the unique aspects of DSD care (e.g., may present with lower acuity and have less of a chronic presence), and also highlighting a potential area of resilience.

Implications for Impact Statement

Compared to other pediatric illness conditions, parents of youth with DSD report lower levels of pediatric (illness-specific) parenting stress. Results highlight a potential area of resilience and underscore the need to better understand how parents are impacted by the unique aspects of DSD care.

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